Movin’ on

Every once in awhile, I get caught up in this debate with myself about C and his diagnosis. He is certainly a far different child from the repetitive speaking, incredibly delayed, challenging child he was when he was diagnosed with high functioning autism years ago. But is he “recovered” and we just somehow missed it? This time my internal debate was started by an occupational therapist, who admitted her relatively high evaluation of his skills was likely due to the fact that she sees kids far more challenged than C is – while seeing no “typical” children ever. It was furthered later, by a visit to a pediatrician we only see for acute care, and have only seen twice.

C is a master at many things. He has changed from the absolute screaming nightmare upon walking into a doctor’s office (picture rolling around on the floor, trying to evade the doctor’s touch, and being restrained simply to look in his ears) a year ago. He has learned, through intense social story and prep work and a series of great, patient docs, that for the most part, it’s a battle he doesn’t need to pick. This new pediatrician we saw today (who has been fortunate not to witness such an event), commented on how well behaved he was. This was followed with a second strong push to put C on zoloft to “fix” his feeding problems. Does this man, lovely as he is, know anything about autism?

It only takes one moment, one brief experience, to snap me back to reality and the knowledge that yes, C is on the autism spectrum; undoubtedly he’s firmly fixed on one end of the spectrum, but on it he is. Kids on the spectrum can be as different as night and day. I have yet to meet two children with the diagnosis who share more than a few similarities. That is, for those who look closely enough.

As I was watching recess on the last day of school, I talked with two delightful women who work with C on occasion. While watching C play, I noticed things they did not. Yes, he is happy. He is often cluelessly happy. Yes, he is delightful and friendly. Yet I watched as the two boys he was playing with whispered behind his back about how to get away from him after they went down the slide. C missed it all, blessedly. Smile on his face, he appeared happy and engaged in play, yet everyone but the closest observer missed the fact that the other kids were plotting against him and he didn’t even notice. That is C’s autism; happily playing along, occasionally connecting with other kids, but mostly appearing to connect while he remains mostly oblivious. It’s just not obvious.

Yesterday, at a public pool, I noticed a similar occurrence. Two little boys about the same age were teasing C while we floated on the lazy river. He took the whole thing as being an elaborate game of chase. He had no idea that the boys were making fun of him. I looked at him, while we participated in the charade, and wondered if I should take his childish sun hat off. Maybe THAT’s why they were making fun of him. Then it hit me. Taking his hat off wasn’t going to do anything; he just has autism. High functioning, sure. Perhaps even invisible to people like his new doctor, who probably thinks whomever diagnosed him was a quack (not the case). Yet I use those experiences to separate the really, really good professionals from the ones who clearly have more we can teach them, C and I.

The day after hearing what the occupational therapist had to say was the day of the double temper tantrums in C’s “very bad day” (see here). A dear friend, who has a son with autism, told me it was the world reminding me that yes, C is in fact autistic. “Don’t doubt that,” she said. “It’s a waste of your valuable time. Just move on from those people who aren’t able to recognize the challenges he faces, those that are masked by his personality. Just move on.”

There are certain levels of knowing me apparently. Many of the adults around me who have known me all my life can’t understand why I got dxed with AS. On the other hand, many of my very good friends responded with “Ah ha!” when they learned of my dx.

Then again, strangers have a 50/50 chance of seeing it. Obviously it has to do with their level of experience and exposure, but I aslo wonder if there isn’t some other reason as well.

But for me, whether the people around me agree or not doesn’t matter, because I know. And I know that the therapies used to help those on the spectrum interact better in life help me as well.

That’s interesting, really, that people don’t/do see it in you. There’s probably an interesting study in there about perceptions and experiences. Always the anthropologist, am I – thinking about the interesting data surrounding how people react to your diagnosis!

And I can’t agree with you enough about the therapies. All those years of OT, PT, ST, feeding therapy, and now music therapy have made HUGE differences for C. When I look back at all the people that have worked with him I feel like he wouldn’t be anywhere near where he is today if it weren’t for all those wonderful souls. Once again, I have to say it takes a village to raise a child, and we have a hell of a village!

Could you show me those little creeps making fun of C so I can beat the living crap out of them?
Thought: My dad is a physics professor, and I grew up going to picnics and parties with the Northeastern Physics department professors and their kids. In college I brought a friend to a physics department party and she said, “I’ve never seen such a bunch of freaks in my life!” I was shocked. They looked OK to me.
I guess I sometimes wonder why we’re so caught up in labels, and so rejecting of anyone who varies from the norm. Since I’m a professional labeler, I find this question sort of painful. I tell myself I have to label in order to know how to help.
By the way, everyone at that party might not have been “cool”, but they were way happier and way more successful than my “friend” ever turned out to be.

I know – I’m such a Momma Bear. I usually take the opportunity to try and redirect the other kid or prod them into playing nicely by being a referee of sorts. But at the pool, I just played along because C was enjoying the situation so much. Although I admit to wanting to drag the kids out of the pool by their ears and find their parents…

Our developmental ped told us if we could just get him through junior high intact he’d find his little niche and be fine. I now understand what she meant by that. But I would like nothing more than for him to grow up to become one of those “nerdy physics types.” It would suit him well.

I see your point about labels. But sometimes they are necessary. C’s diagnosis has gotten him access to all kinds of services that we probably wouldn’t have done otherwise. But I do wonder how it will influence his later life. I worry about life insurance for him, future medical coverage, etc. Yet I know we’ve done what we had to do for him now and we’ll hope for the best later. And I do think we reject the not “norm.” I’d like to think we’re getting better at this, but then I read things like Last Crazy Horn’s post – follow my link in the “weekend warrior” post a few days ago, and it frightens me for these kids.

Thanks, and next time we come across some creeps I’ll give you a call. You are a good friend! 🙂

Sometimes I read your posts and wonder if I’m getting a glimpse at future Chee…

I always enjoy reading your thoughts about C. There’s something to be said for having a delightfully, obliviously happy child. Frankly, I say, Well done!

I see that too; they are very similar. But Chee is way ahead of where C was at that age, which gives me hope that you’ll see tons and tons of progress with her skills and coping mechanisms. But I read YOUR posts and usually have the “oh, yes, I remember that” reaction – sometimes I feel like you are raising the female version of C and I’m raising the male version of Chee! They’re long lost twins!

I am thankful for the obliviousness at times. There are moments when he is aware and there’s more “my feelings were hurt” kinds of conversations happening now. He’s definitely noticing more things – he no longer approaches every single kid at the park, which is good on one hand, but makes me sad on another – that he’s realized that most times kids won’t respond to him in that type of unstructured, non-classroom setting, so he doesn’t bother. That makes me sad, because he is such a great kid and is such a good friend. But he’s happy, definitely so, so until and if that changes, we’ll just go with it happily! LOL!

I’m a faculty kid too . . . not quite as bad as PKs (Preachers’ Kids), but certainly interesting in our own ways. Lots of profs are aspies, you know . . . It probably added to my getting diagnosed late. I mean, look at the weirdos I grew up around! lol English profs. I mean, seriously . . .

I wasn’t a prof’s kid, but we did spend a lot of time around a college when we were kids. My favorite man in the world was my Mom’s college history professor. I’ve always been in awe of faculty folk – truly, they just do their thing and the heck with everything else. I love that. You are probably right – I’ll bet that did have something to do with a late dx for you. It makes perfect sense, really.

One more thing – as to your being frightened for C’s future . . . you have to remember one very important difference between me and C. C has help.

I didn’t.

I do recognize that, and appreciate it greatly. I know it has changed his life, really. I guess I just see him as being on a fence somewhat – one teacher that doesn’t clique with him, a bad bullying experience, and I know it could go downhill fast. It’s not that I’m pessimistic about his future; just hopeful that he will be able to continue on a good path and that he’ll be able to develop some better coping skills in case he doesn’t.

And despite your not having help, you turned out darn well, if I do say so myself! 🙂